Read more
0%
Asya Choudry, BDB’s Community Engagement Manager has joined Jnetics for their screening event at JCoSS, Jewish Community Secondary School. This event is taking place as part of the GENEius programme, a comprehensive education and screening initiative targeting young Jewish adults which was launched by Jnetics in 2017. GENius aims to make Jewish Genetic Disorders educationRead more
On the last day of February every year the rare disease community comes together to raise awareness of rare diseases and their impact. The key message this year is that:Rare is many worldwide.Rare is strong every day.Rare is proud everywhere. You can find out what is going on around the world, and what events are happeningRead more
Check out this fantastic video from one of our members Metabolic Support UK. This video is part of their Patient Insight Breaking Down Barriers Series, which explores the impact that a rare disorder can have on patients and families from the BAME community. In this video, Mum Sabrina shares her stories and experiences of raisingRead more
National Genomic Healthcare Strategy published The Government has launched the new National Genomic Healthcare Strategy – “Genome UK: the future of healthcare” which sets out how the genomics community will come together to harness the latest advances in genetic and genomic science, research, and technology to create the most advanced genomic healthcare system in the world. The Strategy isRead more
The Department of Health and Social Care has published its latest update to its Rare Disease Strategy implementation plan. This is the second iteration of this document, following the previous progress report that was published in February 2019. The document reviews DHSC’s progress on implementing the Strategy and takes a forward look at outstanding actionsRead more
